Exercise with Chronic Fatigue Syndrome (also known as ME)

i have rheumatoid arthritis. my immune system periodically gets confused and attacks my joint tissue as if it was a virus. i've been seriously lucky as far as inflammation and damage, but the fatigue is like nothing that ever happened to me before. idk anything about cfs, but i'm going to assume that it's another immune-cluster thing, so for whatever it's worth, here are my own set of thoughts:

- you can't fight a flare. it does NOT go away by itself if you just bear down and keep pushing through it. my cure for a flare is mostly made up of sleep and grief. oh yeah, and rage
- do anything that you can, whenever you can, but don't get so invested in any of it that you get bitter the next time a setback takes it away. this is an emotional balancing act that i'll probably never perfect for myself.
- don't compare yourself. not even to yourself from six weeks ago.
- keep trucking.
- understand that most 'societies' assembled around the idea of a specific illness have a very sunshine-up-butt kind of agenda whether they know it or not. psychologically, they're mostly in the business of creating poster children. so it's easy to feel minimized by the exact organizations you expect to be able to go to for help. don't blank them, but don't let them tell you who you are or what your personal form of the issue is like.
- if you can't find a trainer/coach/whatever who's willing to take you seriously because you have a 'disease', blow them off. keep looking. that includes the gung-ho types who can't accommodate the idea of you having different needs, AND the cotton-wool types who want you to 'exercise' by sitting in a corner and meditating. find out for yourself what you can and can't do. you get to set your own boundaries AND your own bars.

good luck. it gets easier to do that last one when you've gotten better acquainted with it. but it stinks anyway.

^^^^ thank you so much for that i could write entire arias just around the surreality of it . . . it's almost like a kind of delirium.

I can't even explain it. I feel like I'm 90

sorry, op i just hijacked your thread.

Ok - you are so not alone! Quite a few of us on MFP, eg I have had CFS for 2 years..

I have had good support and advice I think - we have a CFS centre here in London, and I had a young doctor. The advice has been very much - energy managemt (Google spoon theory, and energy envelope) with a real view to avoid doing too much (no pushing through the fatigue, rest instead) but build what you can do by eg getting gently fitter through graded Excercise and by anxiety management so your mind does not get over tired...(Google mindfulness). When the energy management goes well, you also gradually build your capacity as you are not stressing self and so body can do some recovery.

So in terms of excercise I started off with swimming - to be honest in the beginning even walking to the Pool was a bit tough. So I had a rest on arriving before doing a few laps. And a long bed rest afterwards. That was my base level that did not make me iller. But every 2 weeks or so, I'd add another 50m to the swim and let my body get use to that. And started cutting the post walk rest etc. No big increases, no couch to 5k!

Nowadays I regularly swim 1k (but cut back to 700 or so if I am having a bit of a relapse) and have got back to swimming. If nothing much is going on (ie I am on holiday and so no household tasks, elderly parents, work relate stuff) I can cycle on the flat for hours.... But back home in my usual environment, I cannot push that hard.

I have still to cut out the afternoon bed rest - but the noon was has gone apart from for bad times (eg when I am living way beyond my energy envelope as parents unwell). But getting well is taking a long time, and tests all sorts of things ... And I am lucky enough that I do not have to rush back to full time work / study.

I think the excercise has been really helpful - to expand my 'battery', to keep me positive (endorphins), to see very gradual progres and to make myself realise I am doing the best I can to look after my body. But you do need to take a gentle graded
Approach

Hope this helps - and good luck. Xx

Hi, I'm new here! But I had to respond to this. I have/had CFS/ME. Two years ago I was incapacitated to the point of needing to use a stick to walk with, and sometimes needing a wheelchair. Standing for more than a few minutes would wipe me out for days. I was also, understandably, 60lb overweight. And in constant pain, on lots of medications.

I decided to try to clean up my diet, I did a 100 day challenge, no sugar, no gluten, nothing processed. By the end of it I could feel a huge difference in my health, so I kept going. After about a year of that, I'd lost some weight, and was feeling much much better. I decided to try to work up some fitness next. I bought a recumbent exercise bike (so I could exercise while physically supported - I found sitting without a back support very tiring), and started small. I did 1 mile the first time, it took me ten minutes. I very very gradually increased my exercise, both in duration and intensity, dialling it back a notch every time I felt ill after it.

It only took about six weeks for me to really feel a difference energy-wise. A year later, I would say I'm 90% recovered. I still sometimes knock myself back, but only because nowadays I sometimes forget (sometimes deliberately!) to allow for limitations. Nowadays I exercise vigorously for 45 minutes every day. I alternate between the bike, weights, a rowing machine, and barre class. Two days ago I went for a walk, and on the route there is a very steep very long hill, on which I used to have to pause several times when walking. I thought I'd see if I could jog up it, and to my surprise found that I could actually sprint up it! (Although I did feel a bit rubbish the next day....)

I don't think you ever fully recover from a chronic illness like that (or not everyone), but I now believe that with very good nutrition (and I am certain it has to start there), and careful fitness conditioning, you can absolutely get it under control. Or into remission. I'm off all my medication now, and I can honestly say, I'm the fittest & strongest I've ever been in my life.

Also suffered from cfs after a virus five years ago. Lasted about two years and was basically living off glucose energy drinks and takeaways to struggle through the day. Was involved in a lot of sport before and went from skating, dance class and gym several hours a day, to having to sit down if I walked to corner shop ( 5 minutes walk away).
For me getting the diet sorted helped big time. As soon as I managed to have a couple of sensible eating weeks i didn't have the energy lifts and slumps from the drinks. I have later found out some food additives make me lethargic too.
Exercise wise I started by walking round block. Mile and a half plus being in a village their are benches at convenient intervals. Then joined gym where I started out doing few lengths in pool, and worked up to aqua classes.. main thing was choosing activities I could do at my pace and stop if it was starting to affect me.
Luckily seem to be over the worst now but still worry if I'm unexplainably tired.